May is a busy month for folks with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). ME/CFS Awareness Day is May 12th, and the ME/CFS Advisory Committee meets in Washington DC on May 10th and 11th. I have had this debilitating illness for over 25 years, and I am hopeful that advocasy efforts and new research will bring new treatments, and perhaps a cure.
Like many of us with ME/CFS, I vividly remember the day I first got sick. It was a typical Saturday morning in August, 1985. My younger son woke up very early, as usual (he was 3, it's what they do!). I took him downstairs, and got him settled in front of the tv with a bowl of Cheerios. Then I headed back upstairs....that was when it hit me, all of a sudden, like a ton of bricks. It was like all of the energy drained out of me in an instant. I could barely drag myself up the steps, and back into bed. That's where I stayed for the next 6 weeks. I couldn't read, or even glance through a magazine - that just required more stamina than I had. Even talking was almost too much to bear.
My doctor ran multiple tests, finally deciding that "maybe" I had a bad case of mononucleosis. Months went by, and although I improved to the point where I was rarely bedridden, each day was still a major struggle, and the symptoms continued, with horrible fatigue, low-grade fever, sore throat, headaches, night sweats, heart palpitations, cognitive difficulty (or "brain fog" in ME/CFS lingo), numbness in the extremities, blurred vision, and the list goes on and on.
To make a long story short, over the past 25 years I have had good days and bad days, relapses and remissions, but have never been completely well. Research has been done, some progress has been made, but no cause, cure, or effective treatment has been found. It's estimated that at least four million Americans have ME/CFS, and that estimate is surely low, since there is no diagnostic test available. I am not complaining, and I am not looking for sympathy. My story is just one of millions from around the world, and many of those people are far worse off than I am, essentially bedridden, or housebound, for years and years, with no end in sight. I, along with many other advocates, hope to promote understanding and awareness for a disease that has been trivialized for far too long. If you know someone who is suffering from this, or you'd just like more information, The CFIDS Association of America, at cfids.org, is a good place to start. The Whittemore Peterson Institute for Neuroimmune Disease is at the forefront of research into my illness, along with other neuroimmune diseases such as fibromyalgia, Lyme disease, Autism, and Gulf War Illness. Donations may be made at wpinstitute.org.
Thanks so much for reading this! Let's hope that, by May 2012, we can look back and say "Wow, look how far we've come!"
